Day 341 - New Year's Eve

Ava had a good night  and a good day. She is such a joy to see her. She smiles so big when she sees Anthony and I. She really needs to come home now. Hopefully Monday we can change the trach and get on the home vent and GET a home vent. I am going to push for her to be out before her birthday on the 24th but we still need to get nursing so hopefully we can get a temporary discharge date.

Thanking God for the gift of Ava and praying that 2011 is more miraculous.

Day 340 - 25 Days until Ava's First Birthday!

Ava had a good day. Very happy and smiling. She did go down in weight so they went up to 33 ml.

Thanking God for Ava's progress and praying for Ava's lungs to grow strong...

Day 339

Av had another great day today. She worked with Occupational and Physical therapy today. The nurse played a recording on the tv of me reading a story to her and Ava perked up and got all excited when she heard my voice. Tomorrow she gets weighed again. Still have not heard that we got a home vent yet.

Thanking God for Ava's happiness and praying that Ava's home vent comes in and we can get her home before her birthday...

Day 338

Ava had a great day and slept from 5:30 pm last night until 7:30 am today. She was up all day today smiling and went to bed about 9 pm. Absolutely nothing else to report which is good news.

Thanking God for Ava and all good news and praying for Ava to continue to grow stronger...

Day 337 - 28 Days until Ava's 1st Birthday

Ava got her mickey this morning and it went well. They also got a blood gas which was 40 and got labs for her immunoglobins. She got weighed and she actually weighed less - 6.5 kg, she lost .04 kg because her food was getting backed up into her stomach and then being drained out of her stomach. No wonders why she was trying to nurse the other day - she was hungry! The lung center is still going to try and see if Ava can use a larger uncuffed trach because if she went home on a cuffed trach it could cause scar tissue and we don't want to cause any more damage because the only reason she has a trach is for her lungs. Also because Ava would have to come in and get changed to an uncuffed trach and probably spend the night and this would be after she was already home for a while. I'm not too fond of that idea because at that point she would be used to being home with her family. I also found out that all the home vents are on back order from two weeks ago, and they are looking to get one in for Ava. There are also some other children in need of vents too. Hopefully we can get one next week, and they are hoping to put her on one then after the lung center talks to ENT.

Thanking God that we are finally talking about Ava coming home and praying that we no longer need a trach...

Day 336 - 48 Weeks Old!

Ava had a good night and today they found that her GJ tube (for feeding) was coming out a bit so they took an xray and it looks to be in the right place. Her secretions though, look to have some formula coming back so they are going to have the doctor look into it and possibly give her a mickey (which would be flat against her tummy instead of sticking up like a hose). I forgot to mention yesterday that Ava was rooting and wanted to breast feed. It was unbelievable but I was too afraid to just in case it could hurt her progress. Still pumping though...

Our friend Nancy, who has been a big supporter of Ava from the beginning, came in from Texas to visit Ava. This is her cute pic with Ava.

Thanking God for Ava's excitement for life, and praying for Ava to be strong and healthy...

Day 335 - Christmas

Ava had a rough night last night. She had to get her trach changed from an uncuffed trach to a cuffed trach with .5 in it. She kept alarming the vent and also her O2 saturations went down to high 70s - low 80s. She did fine once that was changed. So she will probably have to go home on a cuffed trach. She is on 30% O2.

Today overall was a good day, but I did break down in tears a couple of times because Ava wasn't home with us. I never thought I would be feeling this way, and I don't cry about Ava very often, but today completely moved me to tears missing her so badly. I cried when I was talking to her nurse, I cried afterward, I cried when we got home tonight from seeing her and I am crying now. I have never ached for something so badly my entire life more than I have ached for Ava. Alexandra even asked our night nurse tonight if we could take Ava home and when she could come home. The kids want so desperately to bring their sister home. They are taking it well, but it breaks my heart. Overall, I am so grateful to God that Ava is here. A year ago, we were told Ava's amniotic fluid went up, but as you know, it did go down a week later. It's unbelievable that a year has past and what has transpired within that year.

Thank you to everyone for your cards and well wishes and to our favorite nurses for Ava's gifts and for the generosity of some wonderful people. May God bless you and I can't wait till the day we can pay it forward.

Thanking God for Ava's life and praying that Ava can live without a trach AND vent and we never need to be at the hospital again on Christmas...

Day 334 - Christmas Eve - 11 Months Old!

Ava slept pretty well through the night and woke up around 7:30 am. They changed her trach soon after and she did well. When I came in this afternoon, she was sleeping in the swing and the vent was alarming. After she woke up she wasn't alarming anymore. We put her bed a bit later, and she didn't alarm either. When she went to sleep later, the vent would alarm and her O2 saturations were in the 80s - 90s so they were thinking of putting the cuffed trach back in.

Thanking God for Ava to be here on Christmas Eve and praying for Ava's lungs to grow healthy...

Day 333

Ava slept through the night but I heard she didn't sleep really well. She was kind of fidgety. But in the morning, she wasn't upset so they decided they were going to change her trach to an uncuffed trach with hopes of the home vent on Monday. They didn't get to change it though because the ENT doctor couldn't come in.

Ava did have a great day and she even weighs more: 6.54 kg = 14.42 pounds.

Thanking God for the gift of Ava and praying that Ava's lungs will continue to grow and never need a trach again...

Day 332

Ava had a great night sleep but her respiratory rate was a bit high (in the 50s). They still kept her cuffed trach to no fluid and hopefully we will change her trach to an uncuffed trach tomorrow. She would be fine when she was sleeping. Her O2 saturations would hover in the low 90s when she was awake so she was on 30% O2 again or sometimes 27%. Her face was really red today and we don't know if it was too hot in the hospital. Hopefully next week now will be the home vent, but we know how that changes, right?!

Thanking God for Ava's life and praying for Ava's lungs to grow strong and healthy...

Day 331

Ava had a good morning today. Maybe it was the Miralax prescription that helped. They did go down to half the amount. She is down on her cuff to no fluid in it. Yeah! They also went down to 25% O2 and all of a sudden after a bit she went down in her O2 saturations. So they went back up to 30% O2. They also gave her some antibiotics, not a huge amount to fight the infection but it won't bother the colonization of her trachea. She went right to bed so it was a really good day again.

Thanking God for Ava's progress and praying for the left lung to grow into a healthy one...

Day 330

Ava had another rough morning and woke up at 6:30 am. Her O2 saturations were hovering in the high 80 - low 90s again. The nurse had respiratory come early and give her the albuterol treatment. It seemed to help after a half an hour. Ava went back to sleep and woke up later in the afternoon. Because the doctor hadn't seen her weight yet and because Ava was acting funny, he said he wasn't going to get rid of the fluid in Ava's trach. One of the theories as to why she is acting upset in the morning is because she could have some gas in her tummy and it's bothering her. They put her back on Miralax to help her with her stool.

When we say "mama" to Ava, she has started to turn towards me now when it's said. She knows her mama! ;)

Ava weighs 6.4 kg = 14.11 pounds, her length is the same at 62 cm = 24.41" and her head circumference is a bit more at 40.5 cm = 15.94".

Thanking God for Ava's growth and praying for her get on the home vent and home to us asap...

Day 329 - 47 Weeks Old!

Ava had a cranky kind of morning again. She must not be a morning person, just like mommy. ;) She took a nap and woke up much happier the rest of the day. Her nurse told me that she had a desat to 85 - 87% O2 yesterday morning, but I never heard about it. Respiratory said she had a horrible spell but that kind of spell is really nothing for Ava.

This week is a big week with her hopefully weighing more. She looks so much bigger to me today than last week. They are hopefully going to go down to no water in her cuffed trach and if that goes well, to have an "uncuffed" trach and then maybe, just maybe on the home vent. She still is having a bit more secretions, but it doesn't seem to be causing her troubles. She slept soundly in my arms today for a half an hour and it was heaven.

These are two photos of her in her "First Christmas" outfit. Notice in the second photo how her arms come to "midline". That's a good thing for baby's to do.

Thanking God for his grace and love and praying for Ava to have an AWESOME week...

Day 328

Ava was upset a bit this morning. It seems to be every morning. She was better later in the day and sat up in her red chair. She seems to be having more secretions coming out so they took some to be cultured. They came back with a few white blood cells but that could be because they are part of her trachea now.

Thanking God for Ava's daily progress and praying for a successful week...

Day 327

Ava had an odd day today. She wanted to lay in her bed and not sit up in her red chair. She was able to get back down to 25% O2. Every morning she seems to have a bit of trouble. They checked her cuffed trach and she was at .5 of water so if she has a good weekend, they will go down to no water in the cuffed trach with hopes to get her onto the normal uncuffed trach. Once that is successful, they will try the home vent.

Thanking God for Ava's progress and praying that the home vent goes successfully and we can bring her home soon...

Day 326

Ava's gas was 48 and she even weighed more. She now weighs 6.34 = 13.98 pounds. She seemed to be doing a bit better. Her nurse thought she acted like she didn't feel good but she seemed better later in the afternoon and she didn't look pale anymore. She did have a desat episode down to the 40s but I guess her heart rate didn't go down. I really don't know what happened and if that 40s was even accurate since she was wiggling around but she did change colors.

We now have over 10,000 pageviews of Ava's blog. Thanks everyone for your support.

Thanking God for Ava's progress and praying for Ava to get home to us and become vent free...

Day 325

Ava was a bit agitated this morning. When I came in she was sleeping and I instantly noticed that she looked pale and looked very tired. After she woke up she would smile at me. Then I held her and she fell asleep but I could tell she didn't feel well. She got agitated when she woke up suddenly so I put her back in bed and the nurse couldn't hear any air moving in her right lung. So they gave her a treatment. Her heart rate and respiratory rate was high. The volumes of air she was breathing was also low. She only had .5 of sterile water in her cuffed trach so they went up to 1 and it didn't change anything. After that she got upset and we had to bag her with O2 and after putting saline into her lungs and suctioning her 3 times, she finally sounded better. Her lungs absorbed two viles of the saline and we couldn't even suction anything out. She took a nap and she was a bit better but her respiratory rate would be in the 50s one minute and the next it would be in the 30s. She definitely doesn't feel good. My theory is she is sick but her body is handling it better than before. She fell asleep around 7:30 pm.

Thanking God for Ava's strength and praying for her lungs and body to grow more...

Day 324 - A Year Ago Today...

Ava had a good day. They sized her cuffed trach to 4.5 with her Doctor. I didn't get to see her today because we had too much snow. I miss her so much. I need my baby home.

A year ago today, is the day we went to the sonographer and found out Ava didn't have any amniotic fluid left. I vividly remember the doctor telling me to have an abortion and that if she was my mother, she would tell me to have an abortion. We are so thankful to God for intervening and letting us keep Ava. Thank you God for putting it in my heart that Ava was going to live and for giving us peace along the way.

Thanking God for Ava's growth and praying for Ava's lungs to continue to grow and get rid of the need of the trach...

Day 323

Ava didn't sleep well last night. Her nurse would wake her up and check her vitals etc. Most of her night nurses will let her sleep. She was a little crabby this morning and she was breathing a bit fast. But she went back to sleep until after 12 and woke up happy and smiling. None of her cultures have come back positive but she is back to her old settings at 25% O2 and satting well. The Lung Center said this wasn't going to hold her back going home, but who knows. I'm glad I got to see her like that to assess how to handle her when she is home.

She did go up in weight to 6.16 kg = 13.58 pounds. Yeah! Quite the increase.

The girls got to come in today and meet the Buffalo Sabres through Stone's Buddies at Children's. They made tshirts and cookies and take a photo with the goalie - Ryan Miller. They had a fun day.

Thanking God for Ava's growth and praying that Ava's lungs continue to grow and be exactly how God created lungs to be...

Day 322 - 46 Weeks Old!

During the night, Ava had another episode where she desatted to 60 and her heart rate went down to 80. She easily was bagged up with O2. I came in this morning early to find Ava respiratory rate in the 50s to 70s. She also was satting around 92 - 93 and her heart rate was 150s and 160s. The doctors rounded and they got cultures of everything but the trach since there were no secretions there. Her white blood cell count came back at 21.5 so they gave her an antibiotic since they think she has another urinary trach infection. Her blood gas came back as 54. After they gave her the shot of the antibiotic she was back to her normal happy self. We shall see what they think tomorrow. I hope this doesn't push us back again.

Thanking God for Ava, and praying that God continues protecting Ava and gets her home to us...

Day 321

Ava had a great day but her respiratory rate was a little bit higher. I was a bit nervous something didn't seem right especially since we are going to go away tomorrow until Tuesday night. Her O2 saturations hovered a bit at 92 but then the nurse changed her pulsox (sp?) to her other foot and it went up to 95 so I thought all was ok. Her heart rate looked fine and she seemed fine the rest of the day.

Thanking God for Ava and praying for Ava's lungs to grow strong and healthy...

Day 320

Ava had a great day. She slept from 9 pm to 6 am and went back to sleep at 7 am till 8:30 am. She took a couple of nice long naps. Monday is the next day they are going to weigh her. If she goes up in weight, they are going to go down in the amount of fluid that is in her current cuffed trach. We are hoping she won't need a cuffed trach and will go home on a regular trach. Once that is figured out and she gains weight, they will put her on the home vent.

Thanking God for Ava's coos and praying for Ava's ability to handle an uncuffed trach and home vent...

Day 319

Ava's gas was 34. Yeah! She now weighs 5.64 kg. = 12.43 pounds. She went up .04 kg. They went up in her feeds to 31 ml. She is also at 25% O2. Another great day! Smiles and her oohhhh face all the time. I got to meet physical therapy and we worked with her and Ava got so excited to show Mama what she could do. She was trying to roll over both sides!

Praising God for the miracle of Ava and praying for Ava's strength and lungs to grow...

Day 318

Ava had another great day. We are so blessed to have her. She smiles at everyone and loves to touch people and play with them. She grabs at people's fingers to hold them and when they pass by her, she smiles at them. They changed her GJ feeding tube today and she has less secretions from her tube (only 10 ml) from the past which was 100 ml. This could have been the problem of why she may not have been absorbing all her food completely. They don't want to give her solids yet due to the reflux, but I am hoping that we can maybe start having her taste foods. Her nurse said there is such a thing as a "tasting bag" that we can put foods into and she can suck on. Neurology came in today and reviewed her because of her past possible seizures. They think they were seizures and they are keeping her on her seizure medication just in case. If she did have a seizure, they don't think it seemed to affect her. Praise God for protecting Ava! The neurologist spoke softly under her breath that "Ava might not be too bad off neurologically." Praise God for all he has done for Ava and our family! Tomorrow they will get her gas again and check her immune system with blood tests and get her weight.

This photo is Ava's new funny face she makes.

Thanking God for Ava's progress and praying for continued protection...

Day 317

Ava had another great day. She slept through the night again. I spoke to her Lung Center doctor today who told me that we do not have to wait a month of her growing to put her on the home vent. We just need her to grow a couple of weeks since she has already proven she can grow to make sure that the home vent isn't stopping her growth. They also are going to check her GJ tube that we have been asking to be checked. The other thing the doctor wants to see is if she needs a cuffed trach to come home. He would like her to not have one since it can cause damage to the inside of her neck as well as she can pull it out and it could cause severe damage. Ava will be weighed Thursday to see if she weighs more. At least we know we don't start over waiting a month once she weighs a bit more.

Thanking God for Ava's life and praying for Ava's weight to grow steadily and her lungs to continue to grow stronger...

Day 316

Ava slept great through the night. She did lose weight though. She is now at 5.66 kg again so they went up to 28 ml per hour from the 26 ml. Not too happy with that since this is something we can control and that is what is holding her up from getting on the home vent. Her length is a bit more - 61.5 cm = 24.22". Her head circumference didn't change either. At least she has shown she can grow despite not having enough calories. Ava is always moving too. Even more when she was on 31 ml before.

Thanking God for Ava's development and praying that Ava gains weight and continues to grow stronger and healthier...

Day 315 - 45 Weeks Old!

Ava had another great day! Praise God! She slept from 9 pm until 8 am again. Tomorrow she'll be weighed so hopefully that will be good and she will increase steadily.

Thanking God every day for the gift of Ava and praying for Ava to continue to grow, grow, grow...

Day 314

Ava has a great day. She actually slept from 9 pm until 8:30 am. Yeah! She takes her two naps during the day and sits in her chair, swing and high chair. This video is of her getting her chest physical therapy and smiling at a male nurse at the hospital. Oh how we are in trouble with a three girls. ;) The nurse that had the kids next to Ava told me that she walked over to turn Ava's movie back on because she was crying it was off. She must have put her hand near Ava, and Ava grabbed it and held on. She must really want some attention. Hopefully tomorrow I can see her a bit longer.

Thanking God for Ava's will to live and praying for Ava to fight any kind of illness...

Day 313

Ava's gas was 46. She will only be getting gasses once a week now. Yeah! That's a really good sign. She also got blood taken for her immune system. The results came back but I don't know what they mean. They were a bit out of range, but I haven't heard anything so it must not be a major concern. I'll have to find out on Monday.

This is a movie where the nurse is showing Ava our family photos and Ava smiles at them and says good night.

Thanking God for these wonderful days and praying for Ava's continued protection...

Day 312 - Ava's First Tooth

Ava's gas was 35. She was satting a bit lower earlier today around 93 to 95, but went up after having a nap. Today I found out we received the Care at Home Approval Letter that is dated for January 3rd. We are able to take her home and get nursing for January 3rd. She isn't ready to go home yet, but this is a huge step that we have been waiting for. Now we just need her to get on a home vent and get discharged. We can change the date and it only takes less than two weeks to get that approval once the hospital gives us the exact discharge date. We are heading in the right direction and at least we aren't waiting on the government to get our approval.

Ava's first tooth finally came in! It is on her bottom left side! My baby has a tooth poking through! Praise God!

Thanking God for Ava's life and her growth, and praying for Ava to be protected from any sickness...

Day 311

Ava's gas was 28 today. REALLY Great! It must change based on how the nurse gets it. She got her second shot of Synagis for RSV last night. She slept all night from 8pm until change of shift. Unfortunately, due to our horrible weather tonight I didn't get to go in and see Ava's smile. We are missing her like crazy. Tony was gone for two days, so he has missed her for 3 days.

Ava weighs 5.66 kg =  12.48 pounds. Last time was 5.6 kg. So she gained a bit of weight.

Thanking God for Ava's great gasses and strength and praying for Ava's left lung to grow stronger...